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Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice

Louise Ritchie (Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland, Paisley, UK)
Anna Jack-Waugh (Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland, Paisley, UK)
Elsa Sanatombi Devi (Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India)
Binil V (Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India)
Anice George (Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India)
Joyce Henry (Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India)
Clarita Shynal Martis (Manipal College of Nursing, Manipal Academy of Higher Education, Manipal, India)
Debjani Gangopadhyay (Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland, Paisley, UK)
Debbie Tolson (Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland, Paisley, UK)

Journal of Integrated Care

ISSN: 1476-9018

Article publication date: 28 May 2020

Issue publication date: 19 September 2020

239

Abstract

Purpose

Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.

Design/methodology/approach

Three focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.

Findings

The findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation.

Research limitations/implications

There is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.

Practical implications

The findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India.

Originality/value

This paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.

Keywords

Acknowledgements

This research was funded by the Scottish Funding Council Global Challenges Research Fund 2018–19. Grant number: GCRF/UWS:H190009.

Citation

Ritchie, L., Jack-Waugh, A., Sanatombi Devi, E., V, B., George, A., Henry, J., Martis, C.S., Gangopadhyay, D. and Tolson, D. (2020), "Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice", Journal of Integrated Care, Vol. 28 No. 4, pp. 337-348. https://doi.org/10.1108/JICA-02-2020-0006

Publisher

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Emerald Publishing Limited

Copyright © 2020, Emerald Publishing Limited

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